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How e-Patients Find Answers And Each Other Online

NPR logo[Recently] NPR’s popular program “Talk of the Nation” covered something we discuss often: How e-patients find information and find each other online. Featured guests were Pat Furlong, mother of two boys with a rare disease who started an online community, and Susannah Fox of the Pew Internet and American Life Project, a frequent contributor here. The audio is here.

It’s a good combination: Pat speaks from the heart about her own experience and her passion for community, and Susannah, as usual, speaks as an “internet geologist” — as she once put it, “A geologist doesn’t have opinions about the rocks, she just observes and describes them.” Susannah spoke about her newly-released report “Peer-To-Peer Healthcare,” about which she recently wrote here.

Listener comments begin around 13:00. Examples:

– A woman describes how she started a Facebook group for her painful chronic condition (ankylosing spondylitis) and it’s grown into a website, (Spoonies, take note!) What drove her to create a patient community? “There’s no one else who can understand what I’m talking about.”

– The mother of a newborn with a heart defect found similar parents online. Hearing their stories — and even seeing an upsetting photo — helped her prepare for the surgery.

– On the downside, the daughter of an ovarian cancer patient said her now-cured mom keeps going online to patient communities and getting scared by what she reads. (Host Neal Conan’s observation: “There other parts of the computer that can be addictive, and I guess this one can, too.”)

It’s heartening to hear coverage of online patient communities, including the risks and challenges, in a respected outlet like NPR. (Time covered it, too, a year ago.) And there’s no equal for the reality check of Pew’s data. Some patient activists suggest (and some people fear) that the Internet “frees” patients from doctors, but Pew says that’s not what people are doing. Read more »

*This blog post was originally published at*

About Patient Autonomy

Recently, I was involved in a discussion on an email list serve and decided to takes some of my comments on patient autonomy and blog about them. This arose following a debate about whether the term “patient” engendered a sense of passivity and, therefore, whether the term should be dropped in favor of something else, like “client” or something similar.

Having participated in the preparation and dissemination of the white paper on e-patients, I don’t see the need for “factions” or disagreements in the service of advancing Participatory Medicine. As Alan Greene aptly stated: “This is a big tent, with room for all.”

I want all of my patients to be as autonomous as possible. In my view, their autonomy is independent of the doctor-patient relationship that I have with them. They make the choice to enter into, or to activate or deactivate, the relationship with me. They may ignore my input, seek a second opinion, or fire me and seek the care of another physician at any time. They truly are in control in that sense. The only thing I have control over and am responsible for is trying to provide the best advice or consultation I can. Read more »

*This blog post was originally published at eDocAmerica*

Social Media Managers: Can They Get More Doctors To Go Online?

A social media manager is becoming an imperative position for hospitals.

Medical institutions are waking up to the fact that they need to engage their patients and physicians online. Nowhere is there more fertile growth than in the various social media platforms that are prevalent today — like Facebook, Twitter, and YouTube.

American Medical News recently profiled the phenomenon, highlighting the position of social media manager, which some institutions pay between $60,000 and $80,000 per year.

As it stands, many hospitals are tiptoeing into the world of social networks, guided by the able hands of select online mavens like Mayo Clinic’s Lee Aase and Swedish Medical Center’s Dana Lewis. However, convincing executives of the return on investment remains a challenge. Read more »

*This blog post was originally published at*

Do Social Media Advocates Now Have Something To Cheer About?

Over the last year or two, lots of people have been jumping on the social media bandwagon, i.e., Twitter, Facebook, and so on. There has been a lot of talk about how social media and social networking will revolutionize healthcare, but little evidence to back this talk up. Until now, that is.

Before I get to the evidence that I referred to, I need to clarify something. The goal of social media as I understand it is to get people talking, sharing information and creating new ideas. As applied to healthcare, one of the goals of social media is to get people/patients with like medical conditions taking, sharing and supporting one another. Healthcare researchers refer to this phenomenon as peer support. Peer support is not new to healthcare. Disease-specific support groups (breast cancer, diabetes, etc.) have been around for years. “Group” physician office visits comprised of patients with the same diagnosis have been around for years as well.

The Study

Now to the evidence. As anyone with a chronic condition or who treats patient with chronic conditions knows, patient self-care is critical. Knowledge, skills and confidence are prerequisites for effective self-care management. Read more »

*This blog post was originally published at Mind The Gap*

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